A teen deals with leukemia – guest post

Back at my desk, answering my email.  One remarkable letter came from 16 year old Serena Bonneville, writing from British Columbia.  Serena is newly diagnosed with ALL.  She just started writing her blog in early October.  She has startling insight and a gift for words so it is worth going back to the beginning of her blog to see how one 16 year old mind is coping with illness and life.  Serena writes at Change of Perspective

Andria

Appreciating the Little Things

Food tastes SO good.
Almost 3 weeks into my chemotherapy and food, amongst other things, has been quite the highlight for me. I’m currently taking 8 drugs a day. 4 in the morning, 4 at night. During this phase of chemotherapy, one of these drugs is a powerful steroid known as Predinsone.
Predinsone: (Pred- ni-sone): A synthetic corticosteroid drug used to treat the symptoms of low corticosteroid levels: lack of certain substances that are usually produced by the body and are needed for normal body functioning. Thanks to Predinsone, the thought of a Triple O’s Spicy Ultimate Chicken Crunch burger leaves me drooling every night and when I finally indulge in a long-awaited salty meal, the magnitude of satisfaction consumes all other customary senses. Flavours are louder, textures are sharper, and sensations are heightened with each bite. Consider my perspective on food changed.
In a world that’s constantly changing every day, it’s easy to get lost along the way. Life moves fast. Like Ferris Bueller so brusquely puts it, if you don’t stop and look around once in a while, you could miss it. It’s an insightful quote to think about but in reality, implementing Ferris’s adventurous, spontaneous lifestyle has always seemed impractical with such a fast-paced life.

 

But perspectives change and with the outlook I’ve recently assumed, this quote is more than just a witty line from a once handsome Broderick’s. It’s become a reference much more relatable to me in this new reality: living life to its full purpose and taking advantage of each moment. And don’t think you have to be experiencing a life threatening disease, or be skilfully faking one like Ferris, to justify an appreciative lifestyle.  It may seem unfair and trivial of me to convey such an idealistic opinion (especially when just a couple weeks ago I was lost in a hectic, non-stop schedule like everyone else) but now, with the concentration and attention span of a sloth, I’ve grown ignorant to contemptuous routine worries. I’m realizing, finally recognizing with Ferris, that buried underneath these trivial distractions are lifes’ simplicities, waiting to be valued and appreciated: like the explosive flavours of a Triple O’s Ultimate Chicken Crunch Burger. With extra fries.
Breeding Optimism,
- Serena Bonneville :)
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Cancer Petition: Clothing Line at Target

Editor’s Note: Go to this address to sign petition:  Petition | Keep Talia Castellano’s legacy going by getting her clothing line “Bald Chick Collection” put at Target | Change.org

Keep Talia Castellano's legacy going by getting her clothing line "Bald Chick Collection" put at Target

Keep Talia Castellano’s legacy going by getting her clothing line “Bald Chick Collection” put at Target

    1. Linnette Betancourt
    2. Petition by

      Linnette Betancourt

      Hialeah, FL

Talia Joy Castellano is a 13 year old girl with a bubbly personality. She had Neuroblastoma, a form of childhood cancer since the age of 7 years old and she also had MDS pre-leukemia. Unfortunately, Talia passed away Tuesday July 16 2013 at 11:22am. Talia’s love and light brought people together from all over the world, all races, religions, genders and all ages. Let’s help get her clothing line  ”Bald Chick Collection” at Target. She has gone through so much in her life and the one thing she wanted to accomplish is putting her handprints and footprints on this world.  She deserves nothing less than getting her dream come true!!

 

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Cancer: Lessons about Talking – guest post

We only get a small number of blogs from pancreatic cancer survivors.  The disease is usually not caught until late stages.  Things move fast.  Seldom time to stop and put your thoughts down on paper.  I am especially thoughtful about this since my own recent brush with the possibility of a pancreatic cancer diagnosis.

Kathi Instone, mother, grandmother and newly diagnosed cancer patient writes at: A Last Journey – Welcome

My experience with this cancer is limited.  It’s only been a few months since my diagnosis but there are some things I’ve learned. One thing is that time plays tricks  and a few months can seem like forever.  The opposite is also true, forever can pass in the blink of an eye.

As I go to chemo and now radiation,  I realize that I’m seeing the same people.  Montefiore is a big place, with many, many people with cancer. And yet it seems like we are a very small group. We greet each other, or we smile that knowing smile, “well, here we are again”.   Maybe we only see each other as one drifts in to register and the other drifts out having finished the treatment for the day. But we recognize each other. 

Some times we have  time to talk while we wait together. Like today. As I sat down to wait my turn with the big machine I recognized a woman who is usually accompanied by either a younger woman or an older man. Today she sat alone.  Tall, she was almost bent in half, head resting in her hands, almost touching her knees.  We smiled that knowing smile and then she  began to speak. “We all have something in common here, don’t we”?  This cancer brings us together, it doesn’t discriminate, it doesn’t care who we are.”  Her words almost sounded like questions, she was uncomfortable sharing her thoughts but at the same time compelled to get them out of her head.  Then she looked down at her hands and said, “it helps me to talk about it.”  Again, sounding like a question, apologizing for burdening someone else with her thoughts.  ”It’s important to talk” I said, “it lets you know that you’re not alone.”  Her eyes got wide, “yes!” she said.   Then she was called in for her treatment and our time together was over. So much had just happened in that short conversation. She worked through her discomfort to reach out.. And I realized that just a few words shared between two people can be enlightening and comforting to both. I felt good that I had said the “right thing” and that she appreciated our shared understanding. 

I’ll see her again, I know. Maybe I’ll even learn her name, but it doesn’t matter. We share something very big. 

from: A Last Journey – Welcome

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How Not to Look Like a Cancer Patient at Work – guest post

Here is an insightful and humorous piece.  Dawn Morris, a stage 3 breast cancer survivor, writes an interestingly designed blog: reality from here (cancer’s leftovers) |

How Not to Look Like a Cancer Patient at Work

One fine evening at the local watering hole with the Offsite Strategy Group, I revealed my secret former cancer patient identity to an astonished audience. These guys had worked with me for five years and had no clue of what I’d been through. They were also engineers so I know they’re easily smarter than I am. Therefore, I was nearly as surprised to hear that my subterfuge had worked as they were to learn that I had been through the cancer mill under their very noses. How did I manage to pull this off? Have a seat…

Tip #1: Occupy a relatively secluded cubicle. I was a bit of the “Director’s Pet” at the time (bless her), and so I was sitting a paperweight’s throw from her double-wide executive cube. This was ideal for hiding out from the general employee population, as they tended to avoid cluttering up the boss’ immediate territory. The point is that you don’t have to try to convince your co-workers that your life’s just peachy if they’re not in your face.

Tip #2: Work on a solo project. I was slowly converting our old web design into the newly sanctioned Intranet template, and so was not forced to meet or work directly with anyone else. I had been taking meeting minutes and action items for a couple of IT councils before my adventures in cancer began, but my supervisor reassigned the duty to another employee indefinitely. This was great news, as those meetings started very early and were not exactly easy to transcribe.

Tip #3: Hide your hairlessness. To create the most lifelike effect, I resorted to wearing a wig to work. It was very nice, and played a large role in keeping my condition under wraps. However, by 12:30 p.m. I was ready to rip that thing off my head and send it sailing across the cubicletops. By 1 p.m. I could think of nothing else but that hairy vice squeezing my head. I guess chemo makes your scalp sensitive to pressure, because that wig was the most uncomfortable thing I’ve ever worn. It itched, it made me sweat underneath, and it gave me a headache. I did finally order a sort of Velcro-fastened gel strip to protect my scalp from direct contact with that instrument of head torture. I highly recommend buying one of these if you’re going to wear a “rug” while bald.

My chemo menu did a number on ALL of my body hair. By Easter of 2004, two months after my chemo sessions had ended, I had no eyebrows or eyelashes. To deal with this weirdness, I purchased the first eyeliner I’d ever owned, and dug up an old eyebrow pencil. Every morning for about three months, I drew my face back on with these implements. On a side note, I still use the eyebrow pencil nine years later because my brows never grew back entirely. They’re very sparse, but I love blowing money on cheap drugstore beauty products, so I can deal.

Tip #4: Cover the gray. Not hair — bald, remember? The gray I’m referring to is the poisoned chemo pallor that robbed my skin of its former rosiness, leaving me with a complexion the color of powdered cement. It’s interesting what mud-colored lips do to your favorite lipstick. Just…wrong. Especially with the pinkish colors I preferred at the time. I found that very lightly applied orange-reds gave the closest approximation of healthy lips. For the rest of my cadaverous face, I pulled out some old bronzing powder and found that I looked remarkably lifelike after applying some pretty much everywhere, even on my neck. Pink blush just made my face look dirty at this point. That bronzer was a lifesaver. Or, rather, it saved me from looking like the living dead.

Tip #5: Keep your emotional monsoons to yourself. My health insurance came from my job (rather than my husband’s), and I was terrified of losing it. So, since I was determined to continue working part-time through the merry hell that is modern cancer treatment, I decided that it would be easiest for me to handle if no one knew about my situation. And so all of my apprehensions, aggravations, and increasing exhaustion were hidden away while I was on the job. I cried on no one’s shoulder, and no one knew of the gallons of tears I blinked back.

And that’s how I did it. It’s been nearly ten years now, and I remember it all, as the cliché goes, like yesterday. Fortunately, I don’t really dwell often on my experiences with cancer and its somewhat barbaric (if effective) treatment. I have plenty with which to keep myself distracted — college courses, work, family, cats, computer gaming. And writing my memoirs when I feel like having a good wallow in it all for old times’ sake. Thanks for reading.

from: reality from here (cancer’s leftovers) |

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